Friday, June 30, 2017
Wednesday, June 28, 2017
Ouch
Last week they somehow managed to mistake me for a pincushion. At one point I actually had 3 separate IVs, which I’m pretty sure is my all-time high, and honestly seemed a bit excessive. A friend looked at my arms and commented that I was rocking some hardcore body modifications. Forget about piercing the skin, I go straight for the veins! Maybe I’ll start a new trend!
As usual, things are moving slowly. But, they ARE moving. My chest is a little less tight and my airways are a little clearer. Lately it’s been taking 3 weeks of IV antibiotics to bring me back to baseline, so that’s what I’m expecting this time around as well. However, I will NOT be hospitalized that entire time. My goal is to get out and set up on home infusion before Shabbos. Fingers crossed!!
As usual, things are moving slowly. But, they ARE moving. My chest is a little less tight and my airways are a little clearer. Lately it’s been taking 3 weeks of IV antibiotics to bring me back to baseline, so that’s what I’m expecting this time around as well. However, I will NOT be hospitalized that entire time. My goal is to get out and set up on home infusion before Shabbos. Fingers crossed!!
Sunday, June 25, 2017
Thursday, June 22, 2017
One foot in front of the other
At a doctor’s appointment last month, we agreed that I was kind of hovering on the edge. Not terrible, not great… I could go back on IVs, or continue with the prednisone and oral antibiotics and come back in a month. I chose the latter, and by the end of May I was actually feeling significantly better. I was breathing and walking more easily, and even got out to enjoy a couple day trips without the wheelchair. I stopped the prednisone last month, and the oral antibiotics a week into June, thinking I had actually managed to avoid an exacerbation this time.
Last week, the other shoe dropped. After being off antibiotics for a week, my endurance started slipping again. I quickly resumed taking them, but a couple days later I suddenly started running a fever. By the end of the weekend the fever had settled, but my endurance was shot and I was dealing with miserable coughing fits and loads of upper respiratory irritation. Of course, I can’t just follow standard illness models like a NORMAL person. If I was a normal CF patient, I’d be horribly congested – but I’m not. If I was a normal asthmatic, I’d be wheezing – but I’m not. I’m just in this bizarre no-man’s-land of shortness of breath and upper respiratory irritation and dropping pulmonary function numbers. I wouldn’t want my doctors to get BORED or anything! The oral antibiotics and prednisone clearly aren’t cutting it, so we’re busting out the big guns, and I’m heading back to the hospital for IV antibiotics and hydration.
Honestly, I was not my usual Zen, happy-go-lucky self last night. Since December I’ve been going in the hospital and on IVs every 3 months, and not actually feeling that stellar during a lot of the time between admissions. It’s draining and, frankly, frightening. I’ve known since I was 15 that CF is a progressive illness, and the fact that I’ve made it this far is truly miraculous. I am so thankful for all I’ve managed to accomplish in 38 years despite – or possibly because of? – this disease. I am so very grateful that even though I’ve become disabled and had my life turned upside down, I’m somehow coping with it more calmly and gracefully than I ever thought was possible. But still, putting one foot in front of the other, day after day, while feeling awful is exhausting, and watching this snowball pick up speed is scary.
The one person I desperately wanted to talk to last night was… Mikey. How did you do it, I wanted to ask him? How did you get through this for so many years with a laugh and a smile and a Day By Glorious Day? What is your secret?? Tragically, CF took Mikey away from us a long time ago, and I can only learn from his example without hearing his advice. But, I guess, maybe, I’m already doing it. I keep putting one foot in front of the other and not giving up. I keep squeezing as much life as I can get out of the healthy moments, and even some of the not-so-healthy moments. It may feel like my world keeps getting smaller, but I’m still managing to live within it. And, most of the time, I’m still laughing.
Sometimes, it doesn’t feel like enough. But, hopefully, it will be.
Last week, the other shoe dropped. After being off antibiotics for a week, my endurance started slipping again. I quickly resumed taking them, but a couple days later I suddenly started running a fever. By the end of the weekend the fever had settled, but my endurance was shot and I was dealing with miserable coughing fits and loads of upper respiratory irritation. Of course, I can’t just follow standard illness models like a NORMAL person. If I was a normal CF patient, I’d be horribly congested – but I’m not. If I was a normal asthmatic, I’d be wheezing – but I’m not. I’m just in this bizarre no-man’s-land of shortness of breath and upper respiratory irritation and dropping pulmonary function numbers. I wouldn’t want my doctors to get BORED or anything! The oral antibiotics and prednisone clearly aren’t cutting it, so we’re busting out the big guns, and I’m heading back to the hospital for IV antibiotics and hydration.
Honestly, I was not my usual Zen, happy-go-lucky self last night. Since December I’ve been going in the hospital and on IVs every 3 months, and not actually feeling that stellar during a lot of the time between admissions. It’s draining and, frankly, frightening. I’ve known since I was 15 that CF is a progressive illness, and the fact that I’ve made it this far is truly miraculous. I am so thankful for all I’ve managed to accomplish in 38 years despite – or possibly because of? – this disease. I am so very grateful that even though I’ve become disabled and had my life turned upside down, I’m somehow coping with it more calmly and gracefully than I ever thought was possible. But still, putting one foot in front of the other, day after day, while feeling awful is exhausting, and watching this snowball pick up speed is scary.
The one person I desperately wanted to talk to last night was… Mikey. How did you do it, I wanted to ask him? How did you get through this for so many years with a laugh and a smile and a Day By Glorious Day? What is your secret?? Tragically, CF took Mikey away from us a long time ago, and I can only learn from his example without hearing his advice. But, I guess, maybe, I’m already doing it. I keep putting one foot in front of the other and not giving up. I keep squeezing as much life as I can get out of the healthy moments, and even some of the not-so-healthy moments. It may feel like my world keeps getting smaller, but I’m still managing to live within it. And, most of the time, I’m still laughing.
Sometimes, it doesn’t feel like enough. But, hopefully, it will be.
Subscribe to:
Posts (Atom)